At risk of developing lymphoedema, what do I do when travelling?

Dear all

I am at risk of developing leg lymphoedema as a result of some lymph nodes removed from my groin area.This is not cancer related and I did not have any other treatment.I am looking to find ways to prevent the onset on lymphoedema and needless to say I am getting no answers, help or information from my GP or the surgeon that performed the operation.

I am flying soon for the first time after the operation going to a beach holliday and I do have some other flights lined up in the next months due to the nature of my job and I am worried that they could affect me.Could you please advise what do I do regarding travell insurance, is there anything I need to declare now?Also do I need to wear some sort of garments when I fly and where do I buy them from if so?

Any suggestions are very much appreciated.

Many thanks

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6 Replies

  • I don't think you need to tell your insurance company as you don't have the condition, it is only existing conditions you usually need to declare. Technically were all at risk of developing lymphodema! I guess you just have to be careful, don't walk barefoot in case you injure you foot (although this is something I really miss since developing the condition ), wear sunscreen and a good repellant with deet, cover up in the twilight when bugs are most prevalent. Medivan do a good tights called elegance which are good for flying as they are comfortable and look like regular tights in black. Suggest you call the lsn and ask for advice

  • Most pharmacies stock flight socks which look like below the knee stockings with a heavier 'dernier' than normal stockings but not as bad as opaque ones. Several companies do them. Before I was officially diagnosed with lymphoedema, I went to Boots and the pharmacist measured my legs so I could get the correct size - mine were made by Scholl if I remember right.

    Make sure you drink plenty of water and get up and walk around regularly if/when you can. There are leg/feet exercises you can do whilst flying, can be found via google.

    I agree with what AMH2 said. It may be a good idea also to carry a small first aid kit so you can treat any cuts or bites asap containing things like a few dressings, tape, plasters, antiseptic wipes/cream antihistamines etc.

  • Keep a small phial of Tea Tree Oil handy - best option for killing bacteria and for cleaning wounds.

  • My tips for flying. Make sure that your seat belt is not to tight. Move around as much as you can. If you can't leave your seat exercise your legs and fingers as much as possible. You can do a march while sitting by lifting up one leg and then the other. Exercise feet by pointing toes outwards and then bringing them back. Try circling your feet clockwise then anti clockwise. Fingers take it in turn to touch each finger to your thumb first with one hand then the other, then both. Deep breathing exercises will help. As tempting as it might be do not drink alcohol on the flight because it will probably make any swelling worse. As previously suggested drink lots of water to keep hydrated. Hope this helps.

  • Hi, as you haven't developed lymphoedema I suggest you just do the regular things for DVT, i.e. as mentioned above, move around, point/flex and circle feet, calf raises, etc. On long haul flights I actually go and do some yoga and stretches by the loos or near where the cabin crew hang out (they never seem to mind). As I have lymphoedema, I also do some lymph drainage, starting at the groin, then the knee area, then the ankle and foot. Mind nobody is watching when you do the groin area, it has raised eyebrows ;-) (you can always pop to the loo for that bit) When you arrive, as soon as you can, try to have a lay on the floor/bed with your legs up the wall for a good 10 minutes or so, 20 minutes if possible. I combine this with some full, slow (yogic) breaths, it's very restorative and allows the lymphatic fluid to drain back down.

    If you can get some compression garments then do. I get them on prescription, but presumably you can't get a referral to specialist until you develop the condition... I believe Mediven will sell them to you though (or ask your GP for a prescription, once you've talked to mediven to find out what you need). I can't remember the other company I've used, I will update this if I remember.

    Lymphoedema does not have to ruin your life if diagnosed early enough, so if you do notice anything, get a referral. I was diagnosed early, and consider myself very lucky. My foot is better now than it was 15 years ago, through a mixture of management and exercise (I found this site through NHS Couch to 5K running programme). I don't wear my hosiery every single day (most days) and can wear heels, etc from time to time. I do pay for it if I drink alcohol more than a couple of days running, and I always avoid it when I'm flying, as it makes the pooling worse.

    I wouldn't notify insurance, as you don't have the condition. Mine was triggered (we think) by sun damage my feet got badly burned watching Le Mans 24hr race, it was the only bit of me that didn't have lotion or clothes covering :-( Avoiding trauma to your skin is the only way to avoid that I am aware of, and leading an active life (the muscle movements squeeze the fluid back up the legs).

    Sorry for the rambling reply! Good luck and fingers crossed you don't develop it :-) Safe travels...

  • Dear all for

    Many thanks for your very helpful tips and advices I feel more confident about flying and enjoying the holiday.

    All your responses have been very much appreciated.

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